La Salle freshman lineman Gavin Robbins perseveres despite rare disease

Posted at 7:00 AM, May 23, 2018
and last updated 2018-05-23 19:36:09-04

GREEN TOWNSHIP, Ohio – Gavin Robbins woke up one morning shortly before Christmas 2012 and knew something wasn’t right.

His eyes were swollen shut. His lips were three times their normal size. He had lesions inside and outside of his mouth. He felt helpless.

“It was pretty scary,” said the La Salle freshman offensive lineman. “I woke up and I was, like, licking my lips and like, ‘Uh, what is going on?’ It was like something was on my face, and I couldn’t figure out what it was.”

Angie Robbins was just as frightened. She rushed her fifth-grade son to the hospital from their Liberty Township home. The doctors were perplexed.

“I was like, ‘What the hell?’” Angie said. “My kid was normal one day, and then the next day he had crazy lymph nodes.”

Brad and Angie Robbins took their son to several doctors before Gavin finally received a diagnosis about three years ago. Gavin has Melkersson-Rosenthal syndrome, a rare autoimmune disease that causes his face to swell. He also has granulomas, which resemble scabs on his face.

Moreover, Gavin is resistant to metabolizing pills, so his body responds only to infusions and injections of medicine instead of pills.

He receives a weekly Methotrexate injection in his arm each Saturday night at his Green Township home. The injection is like a chemotherapy drug. He also visits Cincinnati Children’s Hospital Medical Center every three to four weeks to receive Remicade.

Occasionally, he has to have a steroid infusion once a month because the swelling gets out of control.

Dr. Tracy Ting, pediatric rheumatologist at Cincinnati Children’s, has known Gavin and his family since March 2016.

Ting said little is known about Melkersson-Rosenthal syndrome given its rarity. Another challenge is that patients may be diagnosed under a different name, orofacial granulomatosis (OFG).

There are several theories for the cause of MRS/OFG, including infection, reactions to allergens and/or autoimmune causes, according to Ting.

In Gavin's case, Ting is encouraged by the impact Gavin's medication has had and the healthy lifestyle he leads, including with football.

"We have seen significant improvements in Gavin’s facial swelling with these medications," Ting said. "In addition, his energy and moods have similarly returned with treatment with these immune-suppressing medications."

But the medications aren't inexpensive.

Brad, who owns a State Farm insurance agency in Cheviot, and Angie, who works for Blackboard for the IT Services at Miami University, reached their insurance deductible within a month. Remicade treatments alone cost $20,000 monthly, Angie said.

Angie said there has been a lot of time spent with insurance companies because Gavin has such a rare disease and it took a while for the medications to be approved.

Although the medications can cause some stomach issues, his condition doesn’t affect him on the football field.

“You wouldn’t know it,” said La Salle junior running back Cameron Porter. “He comes in day in and day out and just works his behind off every day, a super hard worker. He’s a young guy, but he still brings it every single day.”

Gavin, who is 6 feet 3 and 265 pounds, could very well be a sophomore starter this season for the Lancers. La Salle opens the season at Colerain on Aug. 24.

La Salle freshman Gavin Robbins played center against Winton Woods in a junior varsity game last season at Winton Woods. Gavin, who is 6 feet 3 and 265 pounds, is one of the leaders of La Salle's 2021 class. (Photo by Mary Hoffman)

Gavin, who will turn 16 on Thursday, started for La Salle’s junior varsity last season and saw action in four or five varsity games. He likely will be a guard this season.

“You just want to make sure he’s feeling well,” La Salle coach Pat McLaughlin said. “He’s worked so hard. He’s overcome. We haven’t seen any issues on the field. He hasn’t missed any lifting time. We’re expecting him to be a great player for us. It’s really important to him.”

He is a leader in the freshman class at La Salle and has a desire to succeed. His eye is on the ultimate prize: Ever since second grade, his dream has been to play college football.

“He is so committed to his dream of playing at a D-I college,” Angie said. “He is a straight-A student. It’s crazy. If it was me, I would lay in bed and totally milk it for all it’s worth. He’s a high-energy kid, which has really helped. He’s definitely stronger than I think I’d ever be. I think it’s kind of a mind over matter type thing.”

Brad and Angie have worried about the long-term effects of the medication. There is always that threat of facial paralysis, Angie said. There is also worry about Crohn’s disease, which would cause stomach issues.

“I still feel like there is questions out there,” Brad said. “It’s such a rare kind of thing he has.”

However, Brad and Angie are careful to make sure Gavin’s condition is not considered an issue with college recruiters. They insist Gavin leads a normal teenage life.  

“If you see Gavin on a daily basis, you wouldn’t even know that he’s affected by (this disease),” McLaughlin said. “He just goes about his business in school and in football, and he’s a pleasure to be around.”

Robbins likes math in school. He has an entrepreneurial mind like his father. He is a typical teenager who likes playing Fortnite. And he has a path for his future.

“There are not many 16-year-olds out there I feel like that can be so laser-focused,” Brad said.

Gavin lives in the moment and continues to persevere through a sport he has played since kindergarten.

He has fallen in line with some of the leaders of the La Salle football program the past few seasons, such as 2019 linebackers Brody Ingle, Jarred Uran and Garrett Bledsoe and Porter.

“I remember when we were sitting in here Gavin said this was going to be his backstory with regards to making it and hopefully going to college with some of the things he’s overcome,” McLaughlin said. “He’s definitely doing it. He looks good out there running and in the weight room right now.”

La Salle freshman offensive lineman Gavin Robbins has succeeded in the classroom, in the weight room and on the field. He also volunteers his time with his church. (Photo by Mary Hoffman)

The family attends Vineyard Cincinnati Church. Gavin’s Christian faith is important to him. He’s involved in summer youth service projects. He’s careful about what he posts to social media.

“He doesn’t want anything to stand in his way,” Angie said. “I am really proud of him. He’s definitely matured and grown.”

Family is also important. Brad and Angie like to play Monopoly and card games with Gavin and the couple’s younger daughter, Kaylee. The good-natured competitiveness is always evident with Gavin and his close-knit family.

“He’s a fantastic kid,” McLaughlin said. “Early on when he came here we knew that he was going to be a leader. That trend has continued in the offseason and in the classroom. He’s a high-academic kid and comes from a great family.”